Pain post Axillary Lymph Node Dissection

Bren58

Daisy, you are not that far out from surgery so give it time. I had one node out in Sept 2012 and it took longer than I thought to heal and not hurt anymore. Give yourself at least 6-8 weeks, and then see how it is doing.

Cuculi

Yes, it takes time! In my case it was very painful at the beginning. It has been 7 months and 1 week and I still feel the "rubberband" and I still can't stretch my arm when I want to reach something.  I had just started acupuncture and it has been great!  I do recommend it! The rubberband has reduced significantly in 3 sessions! Will continue as well as with my PT. 

I have a question: when I use a bra I have a visible mark of the elastic of the bra on the surgery side, but  not on the other side. Is this because of having nodes out? 

Bren58

cuculi, I would talk to the PT about this. It sounds like you may still have swelling on that side which is causing the elastic to leave a mark. Is the PT you are going to lymphedema trained?

LoriWNY

Cuculi, I didn't think accupuncture was a possibility because I was told no needles, blood pressure cuffs, etc., on the arm which had the lymph nodes removed as it would increase the risk of infection/lypmhedema.  Were you told that accupuncture on the affected arm would not put you at risk for lymphedma?

sammolisa

I still get pain 3 years post surgery.  It is a different pain now though as compared to the original pain "like the heat of a thousand suns" sunburn pain.   That is the only way I could describe that original pain - a sunburn on steroids.  I couldn't stand to have anything touch my arm,  Baby fleece is about all that I could rest it on.   Anything else and I was screaming to get away from my arm!   Nowadays that original pain is gone,  I still  get Armpit pain depending on my activity and how my LE is that day.   My hair never grew back after the rads were done either.

Cuculi

Hello!

Thanks a lot for your comments! 

Bren, I will check if my PT is lymphedema trained.  I actually changed PT to one in a hospital ( which has a very good rehab centre) closer to where I live plus I could use my insurance. I will make an appointment in the other place and ask, get more info, etc. ( it is the cancer "institute" where I live). 

Lori, I will check again.  I understood that needle used for blood, for certain therapies are not recommended but acupuncture is quite superficial but as I said I will ask again. 

Sammolisa, I remember that original pain. I was able to wear clothes but the stabbing and burning were terrible! 

I really hope to get better each day.  I am 36 with a child and had so much energy before! I exercised, worked, played with my son, wanted to go out, etc. now I do most things but everything demands me effort. Hope when rads finished to be gradually me again because it is very frustrating. 

Linda-n3

There were some studies out of Canada that showed acupuncture did NOT increase risk of LE, and there are studies I think at one of the NYC cancer centers looking at whether it may actually HELP LE - I think it is a phase II or III study.

Cuculi

thanks for the info! I will ask as well...   I just have it try everything ... I am just so tired... Defintely the only reason I am going through all this is my son. 

simplelife4real

I'm glad I found this thread.  I'm almost three weeks out from a LX and ALND and I have  "the heat of a thousand suns" sunburn pain that Sam described.  I can't wait to see my BS in three days.  I've been wearing my shirts and PJ's inside out when I'm at home so the seam doesn't bother me.  I wondered if EMLA cream would numb it out.  Has anybody tried that? The pain makes me cry.  I use what's left of my pain meds at night for sleeping.  I think I have a little cording too.  Like I say, I can't wait to see the doc.

Bren58

simple, I am so sorry that you had to have the ALND surgery as well as LX. The pain can be hard to deal with. You can try the emla cream and see if it would work. If you are still having pain, definitely get a script for more pain meds when you are at the doctor, as pain can slow the healing process. My cording started about 2 weeks after surgery, but I had to wait until 6 weeks post surgery to start PT so it was healed sufficiently. Definitely get a script for PT when you see the doc, and start looking for a PT that deals with cancer patients on a regular basis. Also because of the ALND surgery you are at a greater risk for lymphedema so you want to find a PT that is certified in dealing with that. Here is a link that can help. http://www.stepup-speakout.org/Finding_a_Qualifie...

It might help to write down all your questions and concerns, so you don't forget to cover anything when you are at the doctors office. 

My pain lasted much longer than I expected that it would and I still deal with it from time to time, but it is not nearly as bad as it was in the beginning. Keep us posted.

Cuculi

Dear simplelife, I had surgery May 20 2013.  It has been already 9 months, the longest 9 months in my life.  After surgery I had chemo and then rads.  I am done now. Like you, I had a lot a lot of pain after surgery.  I was glad as well I found this thread.  Again, thanks for all the posts, in particular Bren.  

In addition to what Bren has said, you need a lot of patience.  I just did not know where to find more of it! Painkillers did not really work for me! I was so so frustrated... Besides, the relationship with my husband was signficantly affected... now I am trying to "rebuild" it...I am 37 BTW... The first 3 weeks I had a lot of pain, like sunburn as you said and that something was pulling up my arm. The "sunburn" and stabbing pain got a lot better but that pulling sensation is gradually reducing... very gradually.  

I have had PT and has helped sooo much.  

Take care and hope my comments have been helpful.

simplelife4real

Thanks Bren and Cuculi.   This thread and your comments have helped me a lot already.

SABINA62509

I HAD MY RIGHT ONE REMOVED 

5/25/12, ONE MONTH LATER CHEMO.FOUR MONTHS AFTER LAST CHEMO, RECONSTRUCTION. 

1/25/13.

I HAVE LITTLE FEELING ON RIGHT ARM, NUMB FEELING ALSO, PAIN FROM WRIST TO SHOULDER.

I HAD 23 LYMPH NODES REMOVED.  NOW THE THINK I HAVE NERVE DAMAGE.

GOING TO SEE NURO NEXT WEEK. CAN'T LIFT ANYTHING, BRUSHING TEETH COMBING HAIR.

ITS BEEN A YEAR DOES IT GET BETTER. CAN'T WORK, AND CAN'T GET DISABILITY. BUT I'M NOT LETTING IT DEPRESS ME.

JUST TIRED OF THE PAIN AND FEELING USELESS.

Bren58

Sabina, I am glad you are not letting it depress you. It is very hard to deal with the pain and numbness. I would like to tell you that most of the numbness will go away, but everyone is different. I still have some numbness and times of pain after 10 months, although it is much less than in the beginning. I would highly suggest getting to a PT that deals with BC patients after surgery (see my previous post) They can do a lot of wonderful things. You might also want to see if one of your docs can prescribe a compounded pain cream. My BS sent me to a sports and physical medicine doctor who prescribed it for me. It comes from Derma Tran in Kentucky. They can formulate it with several pain, nerve block, and anti-inflammatory meds. It goes on the skin so you do not have the side effects like with typical pain meds.

Before my surgery last year I bought one of those spin brush toothbrushes because I knew I would be terrible brushing my teeth left handed.

Footballnut

hi all!  I had a mastectomy last Monday March 17 and had lymph nodes removed as there were cancer cells in my lymph nodes. I don't know how many nodes were removed yet but I suspect a lot as there was a lump under my arm prior to surgery. I was born with 1 arm and breast ( both left). My right arm never developed fully due to a congenital birth defect nor did my right breast or muscle. My surgeon told me prior to surgery that he did not think that I would have too much trouble with motion as I must use my left arm. 

Prior to surgery I was given a ooh let from the Canadian cancer society called exercises after breast cancer which I am following 3-4 times a day. They seem to be helping my range of motion. Here I am 8 days after surgery and I can wash my hair. Not as easily as I did prior to surgery but I can get by

I too feel the sunburn pain like many bothers have described and pulling. Sometimes I feel a burning sensation or tingling under my arm. My armpit is numb as is a good part of my left chest

My staples were removed yesterday so now I have tape over my incision which also causes some pulling

Funny this is that I have carol tunnel in my left arm as well which can be very painful  however it has not bothered me since surgery!!  Yet!!

Just wanted to share my experience. I will be seeing my surgeon next wed for a follow up and hopefully diagnosis. I will then ask to see a PT as I want to resume arm weights ASAP

Have a good day everyone!!

scary

I am 2 1/2 weeks post right mastectomy and lymph node biopsy.  i went for follow-up today but forgot to ask very important question, and the office is closed now.  but my armpit is RAW.  can i put aloe lotion or something on it if the skin isn't broken there?

 

Bren58

scary, I am sorry your armpit is so raw. I would call your BS first thing in the morning and talk to the nurse. Find out what they recommend. In the meantime it probably would not hurt to put a cool clean compress on it to try to soothe the irritated nerve endings. I had a raw patch under my armpit also. Turns out I had a reaction to the adhesive tape they used.

scary

Bren58, thank you for the idea about the cool compress.  It was a godsend.

motherofone

Hi!  So glad I found this thread.  One week ago today, I had my SNB.  Only one node was taken.  Thankfully on cancer there.  Thought the surgery was pretty much a breeze until yesterday when suddenly I had pain in my armpit, quite some distance from my incision.  I still have a ton of posts to read, but it appears I'm not alone.  The pain is deep, but yet feels like a shaving brush burn at the same time.  There is burning and sudden stabbing pain if I move a certain way.  I'm about to read more of these posts to see if I can find a reason and maybe, solution?

My BC did not do the SNB with my lumpectomy.  She thought I was pure DCIS and didn't want to mess with my SN unless needed.  She warned me that patients have a more difficult time with this one than the lumpectomy. When my lab report came back from showing 3 spots of micro invasion, the SNB was suggested for piece of mind, just in case.  So two weeks after surgery 1, was surgery 2.  

Bren58

Welcome Mother, and I am glad that there was no cancer in your SN. The SN is not on the surface but is deeper and sometimes some of the nerves in the armpit/upper-outter breast area can get aggravated or damaged during surgery so you may feel a variety or weird sensations while it heals. Make sure you don't over do it with that arm for a few weeks until it is healed and definitely mention it to your surgeon at your follow up appt. You might also try not sleeping on that side for a few weeks. It might take 4-6 weeks to completely heal and hopefully you won't have any pains after that.

motherofone

My post op is next Tuesday.  It is weird to me that it JUST started becoming a problem on the 6th day after surgery.  Id I do something?  I've been careful about lifting and not pushing it too much.  I can deal with the pain, just hoping damage is not permanent.

Stenokim

mother, I'm three months post surgery and I still have a lot of the pains you described. I was told it could take a while to heal.  I also have back/side pain, and my OT and I believe it's from the drains.  I had them for two weeks.  I, like you, can deal with the pain. I weight lift regularly and think that actually helps.  I feel better afterwards.   

Cuculi

Hello!

I had so much pain after surgery... It has been almost 11months and my arm is still not the same... It is sometimes so frustrating... You can see me do pretty much everything but I dont feel comfortable with my arm... Pain is so frustrating... I have to confess that altenative medicine helped me much more.  You will need lots of patience and gradually becomes better

LoriWNY

It has been 14 months since my BMX and ALND and 9 months since the exchange to implants.  I am still dealing with arm issues.  Not real pain but tightness, heaviness, sensitivity, soreness, and numbness.  My arm has, however, gotten much better since 14 months ago so it does take time.  I have done physical therapy, traditional massage therapy, and Graston massage therapy.  All of these have helped immensely.  Swimming and yoga also help.  My next step will be myofascial release therapy.  Cucili, what kind of alternative medicine has helped you?

Cuculi

Hello ladies!

My arm still having ups and downs... certain days I believe it will be over and then again I feel some pain or smthg...

Lori, under "alternative medicine" I include the non traditional, things that doctor look to you with a face of non believing... I believe our mind helps us heal so I visit my homeopath every month (I totally love him), yoga (have stopped though and should start again, check yogaglo.com), pilates (Just started last week), aryuvedic medicine (trying to... but in general my whole nutrition) and some more esoteric things... I believe telling myself I am fine and believing that I am helps a lot.  So I try to think my arm is fine and all the things I do or eat or drink gives me confidence I am doing well. 

good nite!

mimsey

Time helps  I did try Accupuncture also ...

keonghi

Hi all! I'm glad to see this thread is stillgoing and helping so many. I'm sad to say that 2yrs post-op, I am in worse painthan ever. I now have lymphedema as well as epicondylitis (golfers elbow) inboth arms. I lucky enough to be a veteran though and the VA does not skimp oncare. I just received two lymphedema arm pumps that simulate a lymph massage. Does anyone else have these? If not, ask your doctor and see if your insurance will cover it. So worth it! As for the sensitivity in my rt arm, it is slightly better but I wouldn't think about going without a compression sleeve. The sleeves help guard me from things touching me as well as controlling the swelling. Does anyone else feel worse pain if someone or something brushes your arm, than if something firmly touches you? The slight touch sends me through the roof.

LoriWNY

keonghi--I am 14 months post BMX and ALND and I do not have lymphedema, although I do experience heaviness and tenderness in my right arm as well as numbness from the armpit to elbow.  My discomfort is definitely worse if someone or something slightly brushes my arm rather than if something firmly touches it.  The medical professionals are so gentle during their exams that sometimes, I just want to jump off the exam table when they lightly touch my right arm, chest, or foob!  I have been getting Graston massage of my arm which is helping to alleviate the heaviness and tightness immensely.  My therapist firmly touches and massages my arm and that does not really cause the discomfort I feel from the light touching that sends me off the deep end some times.  I am doing lots of "pumping-type" arm exercises which help move the lymph fluid through the arm as well.  I am sorry to hear that your pain in worse now than ever and hope the arm pumps bring you the relief you deserve!

Footballnut

Hi All!  My modified radical mastectomy was March 17th.  I must say that my range of motion is now approx 95% and that most of the tingling and burning is gone.  My armpit is still numb and I continue to have numbness halfway down the back of my left arm but this is not bothersome to me.  Saw my Surgeon last Wednesday and he wants me to continue my range of motion exercises however note that since I was born with a partial right arm, I MUST use my left arm and hand for everything so in a sense, I have been doing physio of sorts since my surgery.  I want to start doing arm weights and while my Nurse says that I can start 1-3 pound weights, my Surgeon wants me to do nothing until after my treatment is over - I start chemo next Wednesday.    :-(

Having said that, I will talk to my MO next week to see what he thinks.

Good luck to all!!!!

simplelife4real

Footballnut, I'm surprised your surgeon doesn't want you to do any kind of exercise with  weights while on chemo.  The general rule is go "low and slow" to avoid lymphedema.  There are some good articles on the LE threads about VERY gradually increasing arm weight exercise.  I'm getting my rads now and have backed off a little on my arm exercises during rads because the rads aggravate the underarm area and create an increased risk for LE, but chemo is a different story.